Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Dear dear Bonnie! Of course I remember you!! Thanks so much for the compliment!! And thank you for the rainbow!! I want you to hear a song my brother wrote about rainbows. You can go to this website and click on SELF PORTRAITS and listen to the song RAINBOW! IT is very sweet! (I did write a story about my father and it was published in a short story book in the U.K.) But I am no writer!! You made my day. I will pray for you and your mother! love pia http://www.eestimaja.ee/ > >Reply-To: Soundsensitivity >To: Soundsensitivity >Subject: Re: from hyperacusis website >Date: Wed, 20 Sep 2006 11:14:20 -0700 (PDT) > >HELLO PIA, > don'y know if u remember me,, > i'm bonnie,, don't have the 4s, but have meniere's disease & > read posts from time to time in this group. > will refresh ur memory he,he-- i'n deaf in rt. ear & going in the > lf.,,-but at same time have hyperacusis, in good ear. > just wanted to tell u ,, this post was SO , well done!!!! have u ever > thought of being a newspaper reporter??? would make a great > one!!! > > my mother, who i cared for ,for 8 yrs. ,had a stroke & can't > bring her home, this time, as i had in past. > it's so 'very' hard on me, visiting her , as the noise in the nursing > home HURTS my ear Sooooo, much!!! > everyone talks loud, because most older people are hard of > hearing,, and i don't dare tell them (i'm deaf in one ear!) or > they talk louder to me AND this only makes it worse in my good ear!! > so i've been using mp3 player or cotton in ear,, this helps,,but > makes it hard for me to hear, anyone that is close by me to hear??? > make any sense out of this???? > > haven't talked to u for some time-- hope all is well as can be!!!! > WISHING YOU A RAINBOW > bonnie > >Pia Levensteins wrote: > Why not print out the information about this syndrome for the >teacher. >I did this at my job after getting warned about complaining!! >I then printed out this syndrome to have them attach it to my files and >suddenly it was real to them and they became understanding. >I will show you what I printed out: > >Since the summer of 1997, unusual cases of hyperacusis have contacted my >clinic to report symptoms that stray outside the 'regular' pattern of >hyperacusis. One of these variations involves strong negative reaction to >soft sounds, in particular, sounds associated with eating, breathing, >speaking, or lip smacking. The first few cases were spaced out over a wide >span of time, and I wondered at the signficance of the reported issues. >Over time, however, it has become crystal clear that this condition affects >more than only a few people. > >The onset of this type of hyperacusis often appears to take place in >childhood years, frequently around puberty onset, with a range variation of >10 + years. The youngest child that I have evaluated was six years old, and >the latest onset appears to take place in the 20s. > >Most of the reported sufferers are girls, about 70 % to date, and the rest >boys. There are often a few other concerns about the patients, occasional >ADD/HD or mild obsessive compulsive disorder, however, as a group they are >high functioning, capable individuals. No remarkable medical history >presents itself in the reporting of the patients as a whole group. As a >matter of fact, they tend to do well in school as a general rule, >academically, enjoy social outings and friends, and participate in many >different activities. > >SInce 1997, I have evaluated over 100 of these cases personally, and >consulted on another 40 cases from far away including other countries. At >this point, in the spring of 2005, I have about 55 patients in treatment >for >this condition, ages six to 41. I have also rec'd dozens of emails and call >from other self-identified sufferers and their families. > >Clearly, this is a rather small subset of hyperacusis, yet, an important >one. > >It has been my experience to date that most of these individuals bring >their >concerns to their physicians and are mostly routed to the mental/emotional >health providers for therapy. Once in a while an audiologist will conduct a >hearing test, but as most of these cases exhibit perfectly normal hearing, >this avenue closes. > >The vast majority of the patients who have contacted me so far have seen >psychiatrists who attempt to diagnose an emotional disorder and most of the >patients are then prescribed various chemicals such as anti-obsessive >drugs, >anti depressants, anti anxiety drugs, or other types of psychotropic >medications. Most of these medications have negative side effects and often >have not been well documented for side effects in children, effects on the >developing brain, and so forth. > >Noises that are identified as bothersome or extremely annoying most often >relate to noises associated with the mouths or noses of other people. >Biting, chewing, forks clicking on plates or teeth, tongues licking lips, >lips smacking when opening or shutting, sssss sounds or other high >frequency >sounds, fingernail biting, or breathing sounds, can send these patients >through the roof, out the door, into their rooms, and into seclusion. In >many cases, it can be one particular person that presents the most >difficulty for the sufferer. > >Emotional reactions are closely related to this syndrome: victims may cry, >yell, strike out, retreat, scream, withdraw, abuse others verbally or >physically, in an effort to remove the negative stimulation. One patient >described these very soft sounds as akin to 'fingernails on a million >blackboards'. There is an irresistable urge to remove oneself. Often the >condition emerges over a period of time, and there are increasingly severe >responses to the stimuli. The use of earplugs is nearly universal but does >not seem to be all that helpful as the hearing acuity is usually very good. > >One obvious symptom is the loss of the family dinner table tableau: in >families where young people have this syndrome, this daily event is >severely >compromised. Ten year olds eat dinner alone in another room, teen agers >take plates to the basement, and so forth. Just seeing another person >'prepare' to lift the fork to the mouth can set off a severe reaction. > >The syndrome seems to emerge rather rapidly over a period of weeks or even >days. WIth the onset of the identification of certain sounds as annoying, >then comes the psychological overlay of conditioned negative reflexes: even >thinking about the possibility of exposure to these sounds can trigger a >severe reaction. Familiar scenes such as the family dinner table can >provoke an emotional outburst. Sometimes a particular person is associated >with certain sounds, and then they must be avoided at all costs. > >Headphones with music pop on at the slighest opportunity, background music >is often played very loudly, the television has to be on 'high' and so >forth >for the sufferer to endure the presence of these irritating sounds. > >It is suspected that the loss of inhibitory functions of the efferent >system >of the auditory pathways (from brain to ear) plays a role in hyperacusis. >Changes have been noted in areas from the outer ear to the brain stem >areas, >and possibly higher, to support this idea, over the past ten years. And it >is fairly well known that most people with hyperacusis will often develop >secondary psychological overlay conditions such as hysteria, anxiety, panic >disorder, paranoia, and depression. > >Personally I have observed these symptoms in patients and found most of >them >to be rational solutions to an irrational condition. The withdrawal from >society, the use of earplugs to try to prevent exposure, the isolation from >the annoying trigger sounds, and the use of sound as a masking attempt, are >signs of an intelligent sentient being attempting to structure their >universe. > > > > >Reply-To: Soundsensitivity > >To: Soundsensitivity > >Subject: Re: Academic Interference > >Date: Wed, 20 Sep 2006 01:52:21 -0000 > > > > > > > > > > > > I am having trouble paying attention to things, particularly in > > > school, > > > > or really when there is more than just two people. I get very > > > > distracted by all of the sounds that I can hear on account of 4S, > > > and > > > > it just gets so loud and stressful that I can't do my work or pay > > > > attention to the lesson. I am in high school, so I'm expected to > > > be > > > > able to sit still and pay attention, but this is swiftly becoming > > > > something that's nearly impossible to do. I've already tried > > > tapping > > > > behind my ear, plugging my ears, humming, trying to distract > > > myself, > > > > and squishing a stress ball right next to my ear. Can someone > > > please > > > > suggest something so that I can actually learn something in > >school > > > this > > > > year? Thank you. > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 OH MY GOD PIA,, this is just unbelievable!!! girl, i cried so hard listening to this!!! i can't express how much i appericiate you sending me this!!! do you know if i could buy this where i live-- Illinois.. would it be avalible at the wal-mart stores?? ***PLEASE LET ME KNOW,, I WANT TO GET THIS!!! IF NOT ''''how would i be able to get it?????? WISHING YOU MANY MORE RAINBOWS BONNIEPia Levensteins wrote: Dear dear Bonnie! Of course I remember you!! Thanks so much for the compliment!!And thank you for the rainbow!!I want you to hear a song my brother wrote about rainbows.You can go to this website and click on SELF PORTRAITS and listen to the song RAINBOW!IT is very sweet!(I did write a story about my father and it was published in a short story book in the U.K.)But I am no writer!!You made my day.I will pray for you and your mother!lovepiahttp://www.eestimaja.ee/>From: BONNIE BARR <b.barr44sbcglobal (DOT) net>>Reply-To: Soundsensitivity >To: Soundsensitivity >Subject: Re: from hyperacusis website>Date: Wed, 20 Sep 2006 11:14:20 -0700 (PDT)>>HELLO PIA,> don'y know if u remember me,,> i'm bonnie,, don't have the 4s, but have meniere's disease & > read posts from time to time in this group.> will refresh ur memory he,he-- i'n deaf in rt. ear & going in the> lf.,,-but at same time have hyperacusis, in good ear.> just wanted to tell u ,, this post was SO , well done!!!! have u ever> thought of being a newspaper reporter??? would make a great> one!!!>> my mother, who i cared for ,for 8 yrs. ,had a stroke & can't> bring her home, this time, as i had in past.> it's so 'very' hard on me, visiting her , as the noise in the nursing> home HURTS my ear Sooooo, much!!!> everyone talks loud, because most older people are hard of> hearing,, and i don't dare tell them (i'm deaf in one ear!) or> they talk louder to me AND this only makes it worse in my good ear!!> so i've been using mp3 player or cotton in ear,, this helps,,but> makes it hard for me to hear, anyone that is close by me to hear???> make any sense out of this????>> haven't talked to u for some time-- hope all is well as can be!!!!> WISHING YOU A RAINBOW> bonnie>>Pia Levensteins <pialevensteinshotmail> wrote:> Why not print out the information about this syndrome for the >teacher.>I did this at my job after getting warned about complaining!!>I then printed out this syndrome to have them attach it to my files and>suddenly it was real to them and they became understanding.>I will show you what I printed out:>>Since the summer of 1997, unusual cases of hyperacusis have contacted my>clinic to report symptoms that stray outside the 'regular' pattern of>hyperacusis. One of these variations involves strong negative reaction to>soft sounds, in particular, sounds associated with eating, breathing,>speaking, or lip smacking. The first few cases were spaced out over a wide>span of time, and I wondered at the signficance of the reported issues.>Over time, however, it has become crystal clear that this condition affects>more than only a few people.>>The onset of this type of hyperacusis often appears to take place in>childhood years, frequently around puberty onset, with a range variation of>10 + years. The youngest child that I have evaluated was six years old, and>the latest onset appears to take place in the 20s.>>Most of the reported sufferers are girls, about 70 % to date, and the rest>boys. There are often a few other concerns about the patients, occasional>ADD/HD or mild obsessive compulsive disorder, however, as a group they are>high functioning, capable individuals. No remarkable medical history>presents itself in the reporting of the patients as a whole group. As a>matter of fact, they tend to do well in school as a general rule,>academically, enjoy social outings and friends, and participate in many>different activities.>>SInce 1997, I have evaluated over 100 of these cases personally, and>consulted on another 40 cases from far away including other countries. At>this point, in the spring of 2005, I have about 55 patients in treatment >for>this condition, ages six to 41. I have also rec'd dozens of emails and call>from other self-identified sufferers and their families.>>Clearly, this is a rather small subset of hyperacusis, yet, an important>one.>>It has been my experience to date that most of these individuals bring >their>concerns to their physicians and are mostly routed to the mental/emotional>health providers for therapy. Once in a while an audiologist will conduct a>hearing test, but as most of these cases exhibit perfectly normal hearing,>this avenue closes.>>The vast majority of the patients who have contacted me so far have seen>psychiatrists who attempt to diagnose an emotional disorder and most of the>patients are then prescribed various chemicals such as anti-obsessive >drugs,>anti depressants, anti anxiety drugs, or other types of psychotropic>medications. Most of these medications have negative side effects and often>have not been well documented for side effects in children, effects on the>developing brain, and so forth.>>Noises that are identified as bothersome or extremely annoying most often>relate to noises associated with the mouths or noses of other people.>Biting, chewing, forks clicking on plates or teeth, tongues licking lips,>lips smacking when opening or shutting, sssss sounds or other high >frequency>sounds, fingernail biting, or breathing sounds, can send these patients>through the roof, out the door, into their rooms, and into seclusion. In>many cases, it can be one particular person that presents the most>difficulty for the sufferer.>>Emotional reactions are closely related to this syndrome: victims may cry,>yell, strike out, retreat, scream, withdraw, abuse others verbally or>physically, in an effort to remove the negative stimulation. One patient>described these very soft sounds as akin to 'fingernails on a million>blackboards'. There is an irresistable urge to remove oneself. Often the>condition emerges over a period of time, and there are increasingly severe>responses to the stimuli. The use of earplugs is nearly universal but does>not seem to be all that helpful as the hearing acuity is usually very good.>>One obvious symptom is the loss of the family dinner table tableau: in>families where young people have this syndrome, this daily event is >severely>compromised. Ten year olds eat dinner alone in another room, teen agers>take plates to the basement, and so forth. Just seeing another person>'prepare' to lift the fork to the mouth can set off a severe reaction.>>The syndrome seems to emerge rather rapidly over a period of weeks or even>days. WIth the onset of the identification of certain sounds as annoying,>then comes the psychological overlay of conditioned negative reflexes: even>thinking about the possibility of exposure to these sounds can trigger a>severe reaction. Familiar scenes such as the family dinner table can>provoke an emotional outburst. Sometimes a particular person is associated>with certain sounds, and then they must be avoided at all costs.>>Headphones with music pop on at the slighest opportunity, background music>is often played very loudly, the television has to be on 'high' and so >forth>for the sufferer to endure the presence of these irritating sounds.>>It is suspected that the loss of inhibitory functions of the efferent >system>of the auditory pathways (from brain to ear) plays a role in hyperacusis.>Changes have been noted in areas from the outer ear to the brain stem >areas,>and possibly higher, to support this idea, over the past ten years. And it>is fairly well known that most people with hyperacusis will often develop>secondary psychological overlay conditions such as hysteria, anxiety, panic>disorder, paranoia, and depression.>>Personally I have observed these symptoms in patients and found most of >them>to be rational solutions to an irrational condition. The withdrawal from>society, the use of earplugs to try to prevent exposure, the isolation from>the annoying trigger sounds, and the use of sound as a masking attempt, are>signs of an intelligent sentient being attempting to structure their>universe.>> >From: "k2_fan_forever" <k2_fan_forever>> >Reply-To: Soundsensitivity > >To: Soundsensitivity > >Subject: Re: Academic Interference> >Date: Wed, 20 Sep 2006 01:52:21 -0000> >> >> > > >> > > > I am having trouble paying attention to things, particularly in> > > school,> > > > or really when there is more than just two people. I get very> > > > distracted by all of the sounds that I can hear on account of 4S,> > > and> > > > it just gets so loud and stressful that I can't do my work or pay> > > > attention to the lesson. I am in high school, so I'm expected to> > > be> > > > able to sit still and pay attention, but this is swiftly becoming> > > > something that's nearly impossible to do. I've already tried> > > tapping> > > > behind my ear, plugging my ears, humming, trying to distract> > > myself,> > > > and squishing a stress ball right next to my ear. Can someone> > > please> > > > suggest something so that I can actually learn something in> >school> > > this> > > > year? Thank you.> > > >> > >> >> >> >> >> >>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Dear Bonnie, I will mail it to you. You can email me your address pialevensteins@... My brother wrote these songs about his life!! I will let him know how much you love it!!! > >Reply-To: Soundsensitivity >To: Soundsensitivity >Subject: Re: for Bonnie >Date: Sat, 23 Sep 2006 19:52:36 -0700 (PDT) > >OH MY GOD PIA,, > this is just unbelievable!!! girl, i cried so hard listening to this!!! > i can't express how much i appericiate you sending me this!!! > do you know if i could buy this where i live-- Illinois.. > would it be avalible at the wal-mart stores?? > ***PLEASE LET ME KNOW,, I WANT TO GET THIS!!! > IF NOT ''''how would i be able to get it?????? > WISHING YOU MANY MORE RAINBOWS > BONNIE > >Pia Levensteins wrote: > Dear dear Bonnie! Of course I remember you!! Thanks so much for >the >compliment!! >And thank you for the rainbow!! >I want you to hear a song my brother wrote about rainbows. >You can go to this website and click on SELF PORTRAITS and listen to the >song RAINBOW! >IT is very sweet! >(I did write a story about my father and it was published in a short story >book in the U.K.) >But I am no writer!! >You made my day. >I will pray for you and your mother! >love >pia >http://www.eestimaja.ee/ > > > > >Reply-To: Soundsensitivity > >To: Soundsensitivity > >Subject: Re: from hyperacusis website > >Date: Wed, 20 Sep 2006 11:14:20 -0700 (PDT) > > > >HELLO PIA, > > don'y know if u remember me,, > > i'm bonnie,, don't have the 4s, but have meniere's disease & > > read posts from time to time in this group. > > will refresh ur memory he,he-- i'n deaf in rt. ear & going in the > > lf.,,-but at same time have hyperacusis, in good ear. > > just wanted to tell u ,, this post was SO , well done!!!! have u ever > > thought of being a newspaper reporter??? would make a great > > one!!! > > > > my mother, who i cared for ,for 8 yrs. ,had a stroke & can't > > bring her home, this time, as i had in past. > > it's so 'very' hard on me, visiting her , as the noise in the nursing > > home HURTS my ear Sooooo, much!!! > > everyone talks loud, because most older people are hard of > > hearing,, and i don't dare tell them (i'm deaf in one ear!) or > > they talk louder to me AND this only makes it worse in my good ear!! > > so i've been using mp3 player or cotton in ear,, this helps,,but > > makes it hard for me to hear, anyone that is close by me to hear??? > > make any sense out of this???? > > > > haven't talked to u for some time-- hope all is well as can be!!!! > > WISHING YOU A RAINBOW > > bonnie > > > >Pia Levensteins wrote: > > Why not print out the information about this syndrome for the > >teacher. > >I did this at my job after getting warned about complaining!! > >I then printed out this syndrome to have them attach it to my files and > >suddenly it was real to them and they became understanding. > >I will show you what I printed out: > > > >Since the summer of 1997, unusual cases of hyperacusis have contacted my > >clinic to report symptoms that stray outside the 'regular' pattern of > >hyperacusis. One of these variations involves strong negative reaction to > >soft sounds, in particular, sounds associated with eating, breathing, > >speaking, or lip smacking. The first few cases were spaced out over a >wide > >span of time, and I wondered at the signficance of the reported issues. > >Over time, however, it has become crystal clear that this condition >affects > >more than only a few people. > > > >The onset of this type of hyperacusis often appears to take place in > >childhood years, frequently around puberty onset, with a range variation >of > >10 + years. The youngest child that I have evaluated was six years old, >and > >the latest onset appears to take place in the 20s. > > > >Most of the reported sufferers are girls, about 70 % to date, and the >rest > >boys. There are often a few other concerns about the patients, occasional > >ADD/HD or mild obsessive compulsive disorder, however, as a group they >are > >high functioning, capable individuals. No remarkable medical history > >presents itself in the reporting of the patients as a whole group. As a > >matter of fact, they tend to do well in school as a general rule, > >academically, enjoy social outings and friends, and participate in many > >different activities. > > > >SInce 1997, I have evaluated over 100 of these cases personally, and > >consulted on another 40 cases from far away including other countries. At > >this point, in the spring of 2005, I have about 55 patients in treatment > >for > >this condition, ages six to 41. I have also rec'd dozens of emails and >call > >from other self-identified sufferers and their families. > > > >Clearly, this is a rather small subset of hyperacusis, yet, an important > >one. > > > >It has been my experience to date that most of these individuals bring > >their > >concerns to their physicians and are mostly routed to the >mental/emotional > >health providers for therapy. Once in a while an audiologist will conduct >a > >hearing test, but as most of these cases exhibit perfectly normal >hearing, > >this avenue closes. > > > >The vast majority of the patients who have contacted me so far have seen > >psychiatrists who attempt to diagnose an emotional disorder and most of >the > >patients are then prescribed various chemicals such as anti-obsessive > >drugs, > >anti depressants, anti anxiety drugs, or other types of psychotropic > >medications. Most of these medications have negative side effects and >often > >have not been well documented for side effects in children, effects on >the > >developing brain, and so forth. > > > >Noises that are identified as bothersome or extremely annoying most often > >relate to noises associated with the mouths or noses of other people. > >Biting, chewing, forks clicking on plates or teeth, tongues licking lips, > >lips smacking when opening or shutting, sssss sounds or other high > >frequency > >sounds, fingernail biting, or breathing sounds, can send these patients > >through the roof, out the door, into their rooms, and into seclusion. In > >many cases, it can be one particular person that presents the most > >difficulty for the sufferer. > > > >Emotional reactions are closely related to this syndrome: victims may >cry, > >yell, strike out, retreat, scream, withdraw, abuse others verbally or > >physically, in an effort to remove the negative stimulation. One patient > >described these very soft sounds as akin to 'fingernails on a million > >blackboards'. There is an irresistable urge to remove oneself. Often the > >condition emerges over a period of time, and there are increasingly >severe > >responses to the stimuli. The use of earplugs is nearly universal but >does > >not seem to be all that helpful as the hearing acuity is usually very >good. > > > >One obvious symptom is the loss of the family dinner table tableau: in > >families where young people have this syndrome, this daily event is > >severely > >compromised. Ten year olds eat dinner alone in another room, teen agers > >take plates to the basement, and so forth. Just seeing another person > >'prepare' to lift the fork to the mouth can set off a severe reaction. > > > >The syndrome seems to emerge rather rapidly over a period of weeks or >even > >days. WIth the onset of the identification of certain sounds as annoying, > >then comes the psychological overlay of conditioned negative reflexes: >even > >thinking about the possibility of exposure to these sounds can trigger a > >severe reaction. Familiar scenes such as the family dinner table can > >provoke an emotional outburst. Sometimes a particular person is >associated > >with certain sounds, and then they must be avoided at all costs. > > > >Headphones with music pop on at the slighest opportunity, background >music > >is often played very loudly, the television has to be on 'high' and so > >forth > >for the sufferer to endure the presence of these irritating sounds. > > > >It is suspected that the loss of inhibitory functions of the efferent > >system > >of the auditory pathways (from brain to ear) plays a role in hyperacusis. > >Changes have been noted in areas from the outer ear to the brain stem > >areas, > >and possibly higher, to support this idea, over the past ten years. And >it > >is fairly well known that most people with hyperacusis will often develop > >secondary psychological overlay conditions such as hysteria, anxiety, >panic > >disorder, paranoia, and depression. > > > >Personally I have observed these symptoms in patients and found most of > >them > >to be rational solutions to an irrational condition. The withdrawal from > >society, the use of earplugs to try to prevent exposure, the isolation >from > >the annoying trigger sounds, and the use of sound as a masking attempt, >are > >signs of an intelligent sentient being attempting to structure their > >universe. > > > > > > > >Reply-To: Soundsensitivity > > >To: Soundsensitivity > > >Subject: Re: Academic Interference > > >Date: Wed, 20 Sep 2006 01:52:21 -0000 > > > > > > > > > > > > > > > > I am having trouble paying attention to things, particularly in > > > > school, > > > > > or really when there is more than just two people. I get very > > > > > distracted by all of the sounds that I can hear on account of 4S, > > > > and > > > > > it just gets so loud and stressful that I can't do my work or pay > > > > > attention to the lesson. I am in high school, so I'm expected to > > > > be > > > > > able to sit still and pay attention, but this is swiftly becoming > > > > > something that's nearly impossible to do. I've already tried > > > > tapping > > > > > behind my ear, plugging my ears, humming, trying to distract > > > > myself, > > > > > and squishing a stress ball right next to my ear. Can someone > > > > please > > > > > suggest something so that I can actually learn something in > > >school > > > > this > > > > > year? Thank you. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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